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Tag: doctor/ patient relationship

When Your Doctor Dies

Several studies have explored the experience of grief that physicians feel when they lose a patient.

But what about when the patient loses a physician—when the doctor dies?

Dr. K was a well-known child psychiatrist, a loving husband, a father of two, and an irreplaceable support and friend for a number of children suffering from trauma, schizophrenia, bipolar disorder, autism and other challenging psychiatric conditions. Earlier this year, Dr. K passed away in a tragic accident while vacationing with his family. His loss was nearly unbearable for most of us.

Days after the funeral, a colleague of Dr. K inquired into whose care his patients would be transferred. She was shocked to hear that one of his patients, a young teenager suffering from Asperger’s syndrome, anxiety, and depression, had overdosed on his medication and committed suicide the day he heard of Dr. K’s death. It was no coincidence.

Behind the family members, close friends, colleagues, and acquaintances are the physician’s patients. They are part of a separate, almost secret life that the physician leads. And yet, the patient is whom the physician spends more time with than anyone else—they are in some ways the truest reflection of the doctor. While family and others grieve together in collective remembrance, patients often do so isolated, alone, confidential.

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Should a Doctor Prescribe Drugs that are Unapproved by the FDA?

Here’s an interesting clinical dilemma brought to my attention by another physician.

She was asked to refill a prescription for a drug called domperidone to help a patient with lactation. Domperidone is not FDA approved in the United States for any indication. However, in Europe and in Canada it is approved as a promotility agent for patients with a condition called gastroparesis, which causes the stomach to empty very slowly and results in chronic nausea and vomiting. As a side effect the drug is also known to increase the production of prolactin, a hormone that stimulates milk production. In the case of this physician’s patient, she had adopted a child and found that the medication had effectively enabled her to produce milk and nurse, with seemingly no untoward effects. It’s unclear who had initially prescribed the drug, but various online lactation support forums discuss it as an option  for women who have trouble with lactation.

The questions: Is it legal, ethical or good medical practice for a physician in the United States to write a prescription for domperidone for a patient who has been using it for lactation with good results? How about for gastroparesis? Where does one get the drug? Is it even legal to sell the drug in the United States?

I’ve cared for at least two patients who have used domperidone. In both instances it was ordered by prescription from an overseas source by a local gastroenterologist. In these two cases my patients had tried just about everything on the market in the United States for gastroparesis and were still struggling with debilitating symptoms. In one case, my patient had required hospitalizations and ultimately a feeding tube because of intractable vomiting. The drug was ineffective in both patients and it was eventually discontinued.

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Should Doctors Keep Patients’ HIV Status a Secret?

At my infectious-diseases clinic in Southeast Washington, I work with some of the city’s most indigent patients. Some don’t have jobs, a home, a car or enough to eat. But recently, I saw a patient whose problem made these issues seem trivial.

Dealing with fatigue, a cough and a fever for several months, this woman in her 40s had been evaluated by four internists. They had tested her for a variety of conditions but not HIV. Each had recommended rest, two prescribed antibiotics, and one suggested an over-the-counter cough medicine. Experiencing no physical relief from these suggestions, the woman had decided to “lay down and die.”

However, after her longtime partner insisted she get medical help, she agreed to go to a hospital emergency room. After a rapid test, which she initially refused because she said she was not at risk for HIV, she learned that she was HIV-positive.

After that ER visit, she brought her partner, whom she credits with saving her life, to my clinic to be tested; she was concerned that she had transmitted the virus to him. He tested positive. About a week later, when he accompanied her to an appointment with me, I asked if he had been seen by a doctor to discuss treatment. He said no and indicated that he wanted to establish care in the clinic.

When I asked if he had ever been on HIV drugs, he gazed at the medication chart and pointed out his previous regimen, a cocktail that contained indinavir. Because I and many other doctors stopped prescribing this medication a decade ago, I knew he had been keeping his condition from her for years. He stopped talking and avoided my gaze. It was clear he knew that I had learned his secret. I had many questions for him; but this visit was for her.

It was not the right moment to dredge up this history and ask how he could keep his diagnosis hidden while watching his partner struggle with her health. I chose not to ask about his dishonesty, their relationship and whether they had used condoms to protect her from getting HIV. At this point, I needed to help her understand that, even though she felt weak and sick, the medications would soon make her feel better. And that, with the right treatment, she could still live a long life.

While talking with my patient about her treatment, my mind kept wandering back to her partner’s secret. Was it my role to admonish him in front of her, or would that make things worse? What would they say to each other when they got home? I wanted to discuss these questions, but did I have a right to insert my judgment into this situation? At a private visit with me two weeks later, she let me know that this was the moment she realized he’d been keeping his diagnosis from her for years.

As a physician, I am not allowed to reveal any medical information about my patients or their circumstances without their written permission. This confidentiality is sacred. But in this case, that constraint felt inappropriate and irresponsible.

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The Rise of the Hospitalists

Good for Healthcare?

Sarah Jones was an anomaly in contemporary healthcare.  Despite shifting alliances between physicians, hospitals, and insurance companies, she had been under the care of the same physician for over 20 years.  Over this time, patient and physician had gotten to know each other well and had developed a fine relationship.  Mrs. Jones had always assumed that, should she ever need to be admitted to the hospital, this relationship would pay big dividends, ensuring that her medical decision making would be based on long acquaintance and strong mutual understanding.

When the dreaded day came that she finally needed inpatient care, however, her hopes were dashed.  Her physician explained to her that he no longer sees hospitalized patients.  Instead she would be under the care of a team of physicians known as hospitalists.  When she arrived, the hospitalist on duty introduced herself and told her that she would be the physician responsible for her care, while colleagues would be responsible during off hours.  Unlike her regular physician, who would have been on hand only once or perhaps twice per day, the hospitalists would always be in house and ready to address her needs.

Mrs. Jones was surprised and disappointed to discover that her primary physician would not be involved in her hospital care.  She had always assumed that she would be able to rely on their longstanding relationship for counsel and support.  She imagined that if she were facing some really important decision, such as whether or not to proceed with a risky operation or how to manage her own end-of-life care, it would make a huge difference to know that she could count on a physician she knew well.  Instead her hospital-based physician was a complete stranger.

Mrs. Jones’ experience is far from unique.  In the past 15 years or so, medicine has seen the birth of hospitalists, a new breed of physicians who care only for hospitalized patients.  There are now over 30,000 hospitalists in the US.  From a patient’s point of view, such physicians offer a number of advantages.  In many hospitals, a specialist in hospital medicine is always on duty, day or night.  Moreover, because such physicians work only in the hospital, they are often more familiar with the hospital’s standard procedures, information systems, and personnel.

It is not difficult to see why hospital medicine might be so attractive to young physicians.  For one thing, it provides them with a high degree of control over their working hours.  They come on and off shift at regular times, and do not bear patient care responsibilities outside these hours.  In addition, they are usually employed by the hospital, which means that they do not need to attend to a host of practice management issues that self-employed physicians confront.  They can also focus on acute-care, in-hospital medicine, avoiding the challenges associated with long-term care of chronic-disease patients.

Some non-hospitalist physicians also find the rise of hospital medicine attractive. They do not need to travel to one or more hospitals each day to see patients, which takes considerable time and generates little revenue.  They do not need to work so hard at staying abreast of changes in hospital procedures and technologies, which often vary from institution to institution, as do requirements for acquiring and maintaining hospital medical staff privileges.  And finally, they can focus their energies on outpatient care, avoiding the more acutely life-threatening and complex situations associated with hospitalization.

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What Doctors Do When They Don’t Know What to Do

Medical care in the U.S. over-promises and under delivers. It costs about twice as much as in most other developed countries, but compared to them manages to produce only mediocre health outcomes. The profit motive has resulted in badly misallocated resources — too much testing and treatment for people who don’t need it and lousy access for many who do.

The impact of advances in medical science on the delivery of clinical care has also been over sold. The basic science revolution in medicine has indeed been brilliant, with powerful new tools yielding remarkable insights into how our bodies work. But translating this into better tests and treatments has been slow work and the practical benefits derived from all the brilliant science have been surprisingly disappointing.

There is a big disconnect between the daily enthusiastic reports of great new research results and the fact that treatment outcomes have improved only slowly and selectively. Clearest example — we have done a lot more to defeat cancer by dramatically reducing smoking than through the entire expensive forty year research war we have waged against it.

Certainly, we need to aggressively pursue medical research, but we also need to be realistic about the limits of our current understanding of disease processes and their treatment.

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The Doctor is Viral

A post I wrote nearly three years ago has recently gone viral, bringing tens of thousands of readers and a huge number of comments.  It’s a letter I wrote to my patients who do something that all but guarantees a bad relationship with many (if not most) physicians: they don’t get better. There are basically two responses I get to this post: either readers are grateful to have a doctor admit to our flawed humanity, or they are furious that I would suggest that patients, the ones with the disease, should see physicians as needy and flawed humans and therefore watch how they act around them.  If you haven’t done so, read the comments to this post and hear the deep frustration and anger brought out by a letter that sympathizes with their pain and (apologetically) tries to help.

Amidst the dichotomy of reactions, both of which I understand, is the obvious question: why has a relationship that exists for the purpose of healing and helping become one of frustration and anger?  The corollary to this question is perhaps more important: what can be done to heal this broken relationship? A reader of my last post (about viewing patients from a different perspective) asked me point blank:  ”Dr. Rob, for the 99.999% of us who do not have a primary care doctor who is thinking as progressively as you, what advice can you give so that we can get our doctors to be treating us in the manner in which you are treating your own patients?”

I must admit, I get a bit uncomfortable with this, as it sounds like I am putting myself above my colleagues morally. Ironically, it is my deep understanding of my own huge flaws, coupled with an upbringing that scorned conformity, that rips me away from the survival self-centeredness most docs eventually adopt.  Putting myself on any moral high ground only invites a very public (and deserved) fall back to the low ground I usually inhabit.  No, I’m also not putting myself down out of false-modesty; I’ve made peace with my flaws, embracing them for what they are: a lens with which I can understand my fellow human scum-bags.  Of course, as my best friend (and best man) used to remind me: “remember, I am doctor scum bag to you.”

Now, I don’t lay the whole problem at the feet of the fallen nature of mankind.  I believe that our system of “health care” doesn’t just fail to counter the flaws of our nature, it actively promotes bad relationships.  It does this by:

  1. Reducing patients to “problems.” The payment system requires we use “problem codes” to classify patients and justify visits.  The problem-oriented approach is not just a byproduct of the payment system, though, it is at the very core of medical education.  Despite a 100% ultimate failure rate, we are still taught that death and disease are the opponents we need to outsmart or out-procedure.  Perhaps its analogous to the public infatuation with the tawdry and grotesque (the more gruesome the murder, the more news shows cover it), but we physicians love “interesting cases.”  But nobody ever wants to be an “interesting case.” Ask any of the people who commented on the blog post.  Boring is better.
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Why Is the Doctor Angry?

I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy.  Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out.  Day-by-day he lay in bed, as he grew weaker and multiple systems failed.  No one contacted me.  Finally, he sent an email to a doctor 3000 miles away, in California.  That doc forwarded the email to me.  I sent the patient to the hospital.

Did we rush to the emergency room, to salvage his life?  Of course.  Were there innumerable tests, complex treatments, multiple consults and an ICU admission?  You bet.  Did I patiently explain to him what was happening?  Yes.  Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?  Did I remind him what I expect from him and what he can expect from me?  You better believe it, I was really pissed!

The practice of medicine for most doctors is fueled by a passion to help our fellowman.  This is not a vague, misty, group hug sort of passion.  This is a tear-down-the-walls and go-to-war passion.  We do not do this for money, fame, power or babes; we do this because we care.  Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning.  Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.

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A Brief Introductory Course In Personalized Medicine: Read the Chart!

While we’re busy debating the pros and cons of clinical genome sequencing and tossing around buzzwords like “personalized” and “translational” medicine, I’ve recently caught some health care providers ignoring the archaic skills of communication and common sense. So while we await genome analysis apps on our smartphones and DNA sequence annotators in our doctors’ offices, here are 3 suggestions on how to provide personalized medicine right now:

1. Read the patient’s chart (paper or digital)

2. Listen to the patient

3. Look at the patient

Disclaimer: Today’s blog is anecdotal and non-scientific, but may identify a trend.

My Missing Thyroid

A few weeks ago, I had a long-overdue check-up, with a nurse practitioner. It was my first visit to the practice, which had provided excellent urgent care.

On the medical history form, I described my circa 1993 thyroid cancer in intimate histological detail: papillary in left lobe, follicular in the right.

The NP spent an impressive 45 minutes asking questions and listening to me – or so I thought. During the brief physical exam, I told her all about my thyroid cancer, my daily Synthroid dose, and even brought her hand to my throat, having noticed that dentists get very excited at my lack of a thyroid gland. No thyroid tests needed, said I. My endocrinologist had recently done them.

So I was surprised when, early the next morning, a Saturday, my cell phone quacked.

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When Technology Understands What People Want From Healthcare, Our System Has A Chance

As a primary care doctor in San Francisco and Silicon Valley, I have been searching for the holy grail of patient engagement for over 15 years. My journey began with an alpha-numeric pager and a medical degree. I shared my pager number with my patients along with a pledge to call them back within 15-minutes, 24-hours a day. My communications evolved into email and texting, with the predicate that by enhancing communication, I could carefully guide my patients down the byzantine corridors of healthcare – with a high probability we could avoid mistakes – if they would agree to share the ownership of their treatment plan. My life’s work has been where the rubber meets the road; where doctors interface with patients: office, hospital or smartphone.

Technology has washed over almost every industry and transformed it, radically. Healthcare is on the precipice of destiny. The wave is here.

Over the past three decades healthcare has lurched from one existential crisis to another; often manifested by an acronym solution: HMO, ACO, PCMH, P4P, PQRS; each a valiant attempt to reign in costs and solve for aligning incentives. However, we can’t have hospitals, doctors, health systems and payers accountable to healthy outcomes if the 300,000,000 people are not paramount to the equation.
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Physician Entrepreneurs

I have been taking a vacation from blogging as I try to get through a very busy academic quarter. But my last blog, “My Son the Electrician” elicited a lot of comments and I have always wanted to follow up. And today I see that the Chicago Sun Times has generously quoted me, in particular noting how I liken physicians to entrepreneurs. Lest anyone get the wrong impression, let me briefly explain what I mean.

Like entrepreneurs, physicians launch their careers by making large investments – up to ten years of post-graduate training. Such investments do not come with a guarantee. Entrepreneurial physicians – those who own their own practices or work in small partnerships, must build their practices and maintain relationships with other physicians. All successful physicians, whether entrepreneurs or employees, enjoy personally and professional satisfying careers and comfortable, sometimes more than comfortable, incomes. But only physicians entrepreneurs have ultimate responsibility for their practices and their patients.

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